← Return to Living with Parkinson's Disease - Meet others & come say hi

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Hello @chrisj2491 @denie57 @johnjames @trouble4343 @ggopher @tntredhead @aperob @caryp43 @burgle and @macbeth. Well we finally have our own group! I’m excited to learn more about you and have some more topics for discussion. Let us know how you are doing and what has helped (or hindered) you in your daily life with Parkinson’s. As we know, all of us are stronger together!

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Replies to "Hello @chrisj2491 @denie57 @johnjames @trouble4343 @ggopher @tntredhead @aperob @caryp43 @burgle and @Macbeth. Well we finally have..."

@knightkris Thank you for sharing your story (and your mom’s story) of loss with @johnjames and with the rest of us at Mayo Connect. Loss is a real part of disabling diseases. We not only lose our physical abilities and our strength but we can also lose the company of our friends and family. I suppose that is why I’m such a strong proponent of support groups. Support groups help us to adjust to a “new normal” and give us “living examples” of people who have walked the pathway that we are walking. I know it is very difficult for some people to make that step to attending a support group, some people are “private” but just attending, even if you don’t share or say anything, provides a great place of solace and support. It also teaches us that we are not really alone nor do we have to be lonely. There are others who are willing to carry our burdens with us. Best wishes as you walk this journey of loss. I would encourage you to find a grief support group in your area. You are dealing with many losses right now and the loss of your mom is big one. Best wishes and keep in touch with us. We are “all ears.”

Hi @johnjames. I’m assuming that “Desert Ridge” area is in Arizona? If you could provide a large city, that might be helpful for my research. Thanks!

Thank you for your insight. This coming month I will be attending my first couselling session at the PD Society of BC Canada. From there and maybe before I will search for a support group in my area. I have attended grief couselling for 6 months, plus other couselling ( couldn’t afford to continue) so I wait.

@knightkris Thanks for letting us know, we will continue to care about you. Keep in touch!

@johnjames Hi JJames: I did a little research for PD support groups in the Phoenix area and came across the website for the Barrow Neurological Institute (the Mohammed Ali Parkinson’s Center). The website lists several support groups, many of which are afternoon/evening meetings, including locations in Mesa, Phoenix, Sun City, etc. Here is the website. https://www.barrowneuro.org/patients-families/find-a-support-group/
Keep in touch and let us know how you are doing. Best wishes for 2017!

Hello @tntredhead I’ve been thinking about you and your husband. How are you both doing? When you have a moment, give us an update so we can keep in touch with you and your needs. Teresa

@ggopher Hi Steve: It’s been awhile since we have heard from you. How are you doing? Is the Sinemet with the carbonated beverage still working well for you? Have you started any new exercise programs? Check in with us when you have time and let us know how you are doing. Teresa

Ho @hopefol. I do use the brief for my hubby as well as the urinal at night. Doc says his kidney and all is good. Right now he is back in assisted living as I have been in the hospital since Saturday. Kidney infection that went into sepsis. Improving and hope to go home tomorrow. Doc says I need a week or so to heal and get my energy back before I bring him home. Hope things are going well for youn

Thanks for checking in with us, @tntredhead. I am sorry to hear that you have been sick, sepsis is a serious matter. I hope that you will have some help when your husband returns home. I am doing well, thanks for asking. Please take care and be well. I’m copying the other members of our group so that they can see your update and wish you well. @chrisj2491 @denie57 @johnjames @trouble4343 @ggopher @aperob @caryp43 @burgle @macbeth @knightkris @IndianaScott Teresa

Teresa, I’m interested in Parkinson’s because that was the long-term diagnosis for my brother, who died a month ago. I must emphasize, however, that in his final days, neurology serious questioned whether he had Parkinson’s or a similar, more widely damaging multi-system degeneration. As my sister-in-law shares information on this with me, I’ll pass it along.

@predictable Thanks, Martin. Sounds good. Teresa

@predictable. I’m sorry to hear of your brother’s death, Martin. Yes, there are a lot of Parkinson’s disorders that are not the same as “typical” Parkinson’s disease, (we don’t all look and act like Michael Fox, etc.). and many are difficult to diagnose. My neurologist told me that when doctors suspect Parkinson’s they try a Parkinson’s med and if that decreases symptoms, they make a Parkinson’s diagnosis. It could be that your brother had PD with some other degenerative disease as well. We look forward to learning more of your brother’s story with a Parkinson’s-like disorder, as you feel comfortable sharing it with us. My sympathies to you and your sister-in-law as you grieve this loss. Teresa

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